Monthly Archives: March 2016

After a couple of nostalgic days in Victoria, followed by a wonderful get away with my sister at a guest house on Cortes Island, and then a nice visit with Don’s son and wife, I was feeling pretty good, in control — got this new situation nailed, I secretly thought. I can do this.

But perhaps those little trips uncovered far too many memories of our past together, of all the good times. I did feel gently sad, but that seemed appropriate.

Went for lunch with Don at Seniors Village and left as he nodded off, having told me again how happy he was to have me with him. Oh my sweet.

Later that night it hit again. Waves and waves of painful grief. I can’t describe the hurt but anyone who has gone through grief knows the incredible pain.

It goes back to the same ambivalence. He is not dead– very much alive and very much himself to the loving eye — and yet the man with whom I built my life is gone, forever. No more sweet nights under starry skies, no more fevered arguments ending in loving forgiveness.

Just a man babbling, mostly, and afraid of every little thing, safely looked after in the nursing home. Still feeling the same to the touch, still trying to use that beautiful mind that has failed him over and over.

Missing me but barely recognizing me when I show up. Thankfully he seems to think I live in the building somewhere, where I visit his mom, dead these 20 years. He is waiting for her. I weep inside but show only smiles outside.

Only a shell. And the pain of loss, unshared.

And then, as suddenly as it came, the grief subsides, rolling back hissing like ocean breakers. I breathe, waiting calmly, quietly now, knowing that like the ocean this will go on.

“A broken heart,” said a wise woman I am proud to call friend, “never heals.”

Tomorrow I  will start to plant my small garden. What else is there to do?

And then go quietly to visit my love again, wishing he could heal my hurt with understanding and care, as only he once could.

It has been just two months and five days since we took Don to the care home. That time seems like so much longer. But things are moving along right on schedule the way “they” say they do.

Sitting with him yesterday on a rainy day, listening to his good-natured but incomprehensible chatter, I looked around the lounge area and realised the patients were all quite happy.

The staff moved around, chatting, checking in on each one. One man was looking at the newspaper and an aide stopped for a long,  rambling, but apparently very satisfying, discussion about the contents. Another aide joined a lady in the colouring project, which consists of a big box of crayons and an endless supply of paper designs. Several of the men snooze in front of a game on TV,  occasionally exchanging somewhat random points–perhaps, actually probably, not even about that particular game.

Staff served afternoon snacks to general satisfaction. A recreation director dropped in to chat and read a story if the mood was right. One guy explained that he really enjoyed watching the people through the window  (actually the colourers at the table 8 feet away) but “just to watch not to talk.”

The first month was hard and chaotic for both of us. I didn’t know what to expect or how to act. I didn’t know how I would survive in an empty house. Don didn’t know what was wrong with me and why I didn’t take him home.

The second month was a bit easier. I started to enjoy my freedom from constant caregiving and expand my horizons. Don began to see the care home as safe, engaging in activities and conversations, thereby proving that 75% of communication is non-verbal — body language, expression, tone, rather than words.

I did go through several permutations of emotion which I had been warned about. The Seniors Health nurse had warned that as soon as I got a bit of rest I would second guess the decision and feel that Don should still be at home. And yes there has been a bit of that, especially on days when he is fretful or frightened. Many others have talked about the emotional shift from perpetual caregiver back to spouse that the situation now allows, and yes that has happened too, bringing fresh grief in its wake.

Meanwhile gradually Don has settled in, seemingly having decided that I live somewhere in the building and just go off to do things. A fine solution although occasionally disconcerting when it becomes clear that he thinks I (whoever I might be) have been visiting his mom.

Overall, despite the bumps in the road, we are adjusting to this new situation. “Some days are diamonds, some days are stones.” But I know this enemy dementia well enough by now that I can expect another stage of decline as soon as we get comfortable again.

But this time, there will be an entire staff of nurses and aides, a dietician, doctors,  an army of professionals, to deal with it and explain to me what is happening. The relief is as much in that knowledge as in my peaceful house. I continue to sleep nine or ten hours a day, awaking with a happy stretch and some deep breathing.

After a lovely evening with a dear friend at the Sunday night jam at the pub, where I was tormented in between the beats with how much my love would have enjoyed the entire event –the sort of happy funky musical event we sought for always  –I am again overcome with angst. How do you  live through this agony?

Each time I grasp at life, I am struck tumbling down again because he is not there to enjoy it with me –the enjoyment that makes it all so much sweeter. The lack of my man turns every grasp I make at recovery into bitter ashes.

For some reason I am remembering the time about 9 months ago when we staggered to the post office where we get the mail for our magazine. Don barely made it up the steps, so I got him in a chair to wait, holding his walking stick and looking quite frail,  while I stood in line. The guy behind me started chatting and we were joking around when I hear a tiny determined voice announcing to the assembled line in general, “That’s my woman there. She’s a really good woman. That’s my woman.” From what I could tell through my embarrassment, the other guys in line were sympathetc and encouraging.

His determination to hold on to me, for his own care -very practical – but also from our love – probably makes this parting which neither of us want (although my freedom is slowly expanding in my mind)  so much more painful.

Don seems happier today. Nice to be with. But he had peed all over his room again this morning. Shoe, chair, etc. … I started to cry and the care aide gave me a hug and said, it’s OK we know it is just the way that disease goes…. )

I’m his woman and he’s locked up in a dementia ward. Where all reports are that although he still constantly asks for me (but only recognizes me half the time when I come) he is doing fine, even singing and dancing on occasion when the time is right.